ME/CFS is a mast cell disorder (hypothesis)

I have been taking NeuroProtek for almost a month now, with an interruption of a couple of days while waiting for a shipment. For me, this stuff works! Those two days without NeuroProtek were absolutely terrible, with extreme fatigue and terrible brain fog. Once I restarted the NeuroProtek, things returned to "normal". I am not cured but life is much more bearable now. I take the maximum recommended dosage of 9 caps/day, three caps one hour before each of the three meals.

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Good to hear that it works for you. Since luteolin on it's own had no effect, isn't it reasonable to presume that it is mainly the quercetin that is working for you? Did you ever try quercetin on it's own? Of course, there is also the possibility of a synergistic effect.

Very interested in this. So... you were less tired. I have done well with the methlylation but I still have sinus issues. So if I have a bad sinus day, no amount of the b's is going to get up and going. Do you/have you had allergies or MCS or other type symptoms in the past that were reduced while on NeuroProtek?
Thanks!

Do you/have you had allergies or MCS or other type symptoms in the past that were reduced while on NeuroProtek?

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Yes, I do have allergies, including to all food I put in my stomach (possibly due to decades-long acid suppression). I also have constant rhinitis and almost constant sinusitis. Sinus pain is absolutely horrible and the only thing that helps are steroids which I take daily. Right now, I don't feel courageous enough to stop the steroids and see what happens...

For me, its all about the sinuses. I could be dead tired, emotionally sad, just not feeling good. Then I go clean them out and within 15 seconds--- yes seconds, I'm good to go. I feel good and have energy. I take 1200 of mucinex and two hours later flush it out. When its really bad I jump on the trampoline to force it out, and it works really well too! I have been battling them for 15 years and now its just a nuisance but it would be great to get rid of it! I have tried quercetin but with no effect. Im going to look into it.

@place- that's exactly how I feel. If my sinuses are a mess my brain is a mess and I can't function no matter what I do. Stimulants occasionally help me when my sinuses are clear, but only make things worse when they are stuffy. Sudafed has helped in the past but I don't like to take it too often since it's over-stimulating. I tried quercetein+bromelein last year after I first saw Dr Theo speak and read his research, and didn't get any effect. Neuroprotek is pretty expensive at full-dosage (which is why I tried the much-cheaper straight quercetin), but sounds like it's worth a try as there is nothing else on the market with this exact combination.

On a related note, I remember talking to a few fellow patients and several of us used to get hives when we exercised before we had CFS. It started for me when I was I was in high school; if I went running, my legs would get really itchy hives that would take hours to clear up. It only happened when I ran, which made me think it was linked to my heart rate staying high. I never had it when I played tennis, so it wasn't due to sweating or general exercise. I never knew anyone else who had this experience so I was surprised when it turned out several other patients had it.

Thanks so much for posting all of the info and links, nanonug. I have, or have had, most of the symptoms described including the freckle-like skin lesions on my arms, legs, and back that flare when I do. They turn red and itch after a shower and after I've been in the sun, just as described in one of those videos. One doctor biopsied them and found nothing, but that was decades ago. Another suggested they were tinia veriscolor, but antifungals have no effect.

Also of interest is that the only drugs I've found helpful are klonopin and a child's dose of zyrtec. I notice that both are used in the treatment of the mast cell disease. Needless to say, I've printed out a ton of info for my doc and have ordered the NeuroProtek. Sure worth a shot!

I'm on day 4 of Neuroprotek with no noticeable effect which I take as a good sign after my short misadventure with MAF 878. I may have to take out a second mortgage to do it, but I'm committed to a two month trial. The more I read in Mastocytosis support groups, the more commonalities I find.

Hi nanonug, in reply to the picture in post 45, that is very much what has been happening for decades. Many people who make a discovery say this one must be the cause, or the most impotant issue, or whatever. I usually use a diamond analogy because diamands have a lot of facets and ME or CFS have so many different findings. I have used the elephant analogy before, its a classic in philosophy, but its very nice to see this displayed in a cartoon.

However, unless the cause has multiple necessary factors causing it then sometime somebody is going to be right. If its multiple factors leading to a cause, then I think it more likely that different researchers will get a piece of the puzzle then realize its the same puzzle, and snap the pieces into place so we can get the big picture.

I tried New Chapters scutellaria baicalensis for four months and it really worked well for inhaled allergies, much better than quercetin did (1 capsule a day worked much much better than 3 or 4g of quercetin). I don't remember if it helped with reactions from ingested allergens. This was all before I knew I was high histamine or anything about methylation. I've since found that 20-30mg of manganese a day works almost as well as the skullcap, and 200mg of SAM-e in addition works even better but only for 4-6 hours. SAM-e allows me to tolerate leaf mold which makes half my body weak and lose coordination, the others aren't quite strong enough. I haven't tried the skullcap since but would like to. I just don't know the mechanism of why it worked.

The reason I tried it was that it was safe for people with liver damage, and fortunately I had no MCS or allergic reaction to it. I couldn't tolerate nettle.

Allergies and chemical sensitivities are not the same thing. The gut immunology of all these is a balance of different factors. While mast cells are indeed implicated, they work in conjunction with other parts of the immune system. A huge allergy suppression factor in the gut is from gamma delta T cells. There is evidence that we have something wrong with them too. I am investigating the literature and hope to write a blog on this soon. It may be that the mast cells are fine, but the systems which suppress them are not working. Bye, Alex

Thanks for the info, fozzaw, all very interesting. Might try some manganese based on your comments.

I used to take S. baicalensis off and on (the worst tasting herb I've ever tried), but it was just one cap a day and I wasn't sure it was doing anything (I have New Chapter, too, seems like a good brand). I take eleuthero now, it's been a really good herb, think I'm going to add some baicalensis back in again at a higher dose.

Background. Patients seek an effective alternative to pharmacotherapy including herbal treatment options for allergic rhinitis and rhinosinusitis. Material and Methods. Nasal mucosal tissue was obtained from 12 patients, fragmented, preincubated with tissue culture medium, S. baicalensis and/or E. senticosus and/or vitamin C (each compound 0.2 μg/mL and 2 μg/mL) for 1 hour at 37°C/5% CO2, and stimulated with anti-IgE for 30 minutes and 6 hours to imitate the allergic early and late phases. Furthermore, Staphylococcus aureus superantigen B (SEB) stimulation for 6 hours was used to imitate T-cell activation. Results. The combination of S. baicalensis and E. senticosus had a more potent suppressive effect on the release of PGD2, histamine, and IL-5 than S. baicalensis alone. The combination also resulted in a significant inhibition of SEB-induced cytokines comparable or superior to an established topical corticosteroid, fluticasone propionate. Vitamin C increased ciliary beat frequency, but had no anti-inflammatory effects. Discussion. The combination of S. baicalensis and E. senticosus may be able to significantly block allergic early-and late-phase mediators and substantially suppress the release of proinflammatory, and Th1-, Th2-, and Th17-derived cytokines.

Saw a dermatologist today to have the freckle-like lesions I've had for 30 years with no diagnosis checked out yet again. I mentioned urticaria pigmentosa, and when he saw them he was as excited as a pig in slop! Did a couple of punch biopsies and took a lot of photos for his students up at OHSU (oh, yay). He promises they won't end up on the internet. Better not considering what he photographed.

He says he can't be 100% sure but he believes it is telangiectasia macularis eruptiva perstans (TMEP) which is a rare form of cutaneous mastocytosis. He's only seen one other case in his career. I also have dermographia. The marks he made on my back are still itching seven hours after the fact.

They have to use special dyes to check the biopsies for mast cells which takes a little longer, so I probably won't know anything for two weeks. In the meantime he said to stay on my zyrtec and not go anywhere without my epipen. Duh! He did tell me that I was a smart patient though. I just gave credit to you all.

Allergies and chemical sensitivities are not the same thing. The gut immunology of all these is a balance of different factors. While mast cells are indeed implicated, they work in conjunction with other parts of the immune system. A huge allergy suppression factor in the gut is from gamma delta T cells. There is evidence that we have something wrong with them too. I am investigating the literature and hope to write a blog on this soon. It may be that the mast cells are fine, but the systems which suppress them are not working. Bye, Alex

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When first line defense fails, second line defense has to work harder.

Curiously, many of the antigens to which γδ T cells respond are found not only on certain types of invaders (e.g., Mycobacterium tuberculosis, the agent of tuberculosis) but also on host cells that are under attack by pathogens.

Our work implies that Vg9/Vd2 T cells are much more versatile than initially thought; not only that they can directly eliminate cells that are infected by pathogens and kill cancer cells, they can also coordinate the action of other immune cells.

The same gamma/delta T cell population may readily and rapidly assume distinct Th1- and Th2-like effector functions, and potentially provide B cell help in secondary lymphoid tissues.

Even more, Vg9/Vd2 T cells also acquire features of professional antigen-presenting cells (APCs) and induce primary responses of naive CD4+ and CD8+ alpha/beta T cells.

The unanticipated functional plasticity of gamma/deltaT cells is reminiscent of, and may even exceed, that of conventional T cells.

These findings suggest that gamma/delta T cells profoundly influence the complexion of the immune response
Dysregulation of gamma/delta T cell function may thus affect pathogen clearance, and lead to inflammation, allergy, and autoimmunity.